30th December 2017

My First Post-An Introduction

In 2008 I was diagnosed with complex mixed connective tissue disease (Scleroderma, Raynauds Phenomenon/Systemic Sclerosis /Myositis/ with inflammatory Rheumatoid Arthritis overlap). This disease came as a bolt out of the blue. One day I was fine, the next I was unable to move, my joints were swollen and I struggled to stand. Here began my long, painful and frustrating journey into the autoimmune disease abyss……… My local GP ran blood tests which were inconclusive. He put me on a high dose of Prednisolone and NSIDs and referred me to a Consultant Rheumatologist at a local hospital. I was extremely fortunate to have private medical insurance at the onset of my disease. My consultant ran every test imaginable and I was diagnosed in a short space of time. I was referred onto the Royal Free London Hospital under Professor Chris Denton and his team. With that initial diagnosis, I believed that my life was over and that I had been given a death sentence. I fell into depression. I felt very sorry for myself, my health deteriorated rapidly. I lost two stone (12.7 kg) breathing became difficult as my lung function deteriorated and my hands started to tighten and retract into claws. My emotional health mirrored my physical health and I withdrew into myself. Life was a struggle and I contemplated suicide on numerous occasions. The single motivating factor that prevented me from taking my life, are my beloved sons. In my head, I bargained with myself to just keep going […]
3rd January 2018

Coping with the Bad Days

Coping with flare ups and the bad days. Coping with my Autoimmune diseases is work in progress, no two days are the same. One day I can wake up feeling physically and emotionally okay, on these days I manage basic tasks, showering, getting dressed making a cup of tea and pottering around. On a bad day when I have a flare up (I feel like a tourniquet has a strangle hold on me, my joints swell and are painful to touch). My body feels like I have been run over by a heard of galloping wilder-beast (metaphorically speaking) on these days basic tasks are virtually impossible, getting out of bed and standing are a huge effort. My arms and legs feel so heavy and walking is painful. In the early stages of my disease, waking up to a flare up or a bad day was extremely upsetting and frustrating, I would burst into tears and become very morose. My thought process would turn into persistent circular thinking and rumination. I would think about it. And think about it. All this thinking did, was deepen my sense of helplessness and depression I would become irrational and beat myself up internally. Had I eaten or drunk something that disagreed with me? Had I done too much the previous day? What had I done to trigger this episode? Breaking my pattern of circular thinking and rumination was very hard and I still struggle with it. I am learning to turn down the volume […]
19th March 2018

Managing the symptoms and side effects of my autoimmune disease

Managing the symptoms and side effects of my autoimmune disease is a juggling act. Like many sufferers of an autoimmune disease I am prescribed a wide variation of medication and as with all medications they help manage the symptoms but they also have side effects. Often the side effects are not well documented and will vary from person to person. I am prescribed Prednisolone, this type of medication is widely used to manage inflammatory conditions, infection, allergies, certain cancers and is commonly used to prevent organ rejection after a transplant. Prednisolone is a corticosteroid drug which helps reduce inflammation and dampens down the immune system. My dose varies from 2.5 mg when I am doing well, up to 40 mg when I am unwell. I find this medication helps with my mobility and my energy levels, however, reducing the dose has to be done slowly and gradually as it causes withdrawal symptoms. The long-term side effects of Prednisolone on my system are osteoporosis, gastrointestinal problems, stomach ulcers and liver problems. I have been prescribed Methotrexate for the last five years and this medication is commonly used in the management of autoimmune diseases and cancer. Methotrexate is an antimetabolite and it works by suppressing the immune system to help reduce joint damage, in the hope that it will preserve the joint function. It also slows the growth of cancer cells. I take this medication in tablet form once a week and I will normally take it on a Monday morning. The […]
10th May 2018

Pain

Pain Pain is debilitating, our natural human response to pain is to escape from it, get rid of, or avoid it. The reality for many pain sufferers’ is, it is an unavoidable and part of everyday life. Learning to ‘Be With’ pain, illness and distress is a challenge. I find managing my chronic pain is wearing and exhausting and I do go to my dark place. Quiet often, my resolve to stay alive and lead a meaningful purposeful life gets severely tested, my pain does eat away at my determination to stay strong, and my resilience to keep going diminishes. The breakthrough in learning how to ‘Be With’ my pain came when I realised that I was inadvertently allowing my resistance to my illness the energy that it needed to gather momentum.  In my desire to avoid and get rid of my pain and ‘Do’ something about it, I was getting sucked down by it. The metaphor of unconsciously allowing energy to gather momentum has helped me change my frame of reference and shift my position. My pain is what I deal with, it does not define me. Finding ways to dampen down the intensity of pain and functioning I believe is key.  For me, being able to function means that I choose to take pain medication.  The dosage I take, varies according to my levels of my pain.  I know that when I am bad, I need to get help and therefore I “Get the big guns out”. I am very aware of the side effects that the medication has on my […]
21st June 2018

Loss and Grief

Life has always been precarious, fragile and impermanence may seem harsh. Life is about gain and loss, accepting this allows us the potential for healing and repair. It is  how we carry on after a loss that is important.  Loss is not something we are able to control. The only thing we can do is control our actions and reactions to it. Missing someone or something is part of life. When something we thought was constant changes ,we often question our belief system. The fragility we feel after a loss, is very real. Grief responses are instinctive in all of us and are geared towards re-establishing our relationship with the loved one. A common feeling of grief is pain each time the loss is remembered. Searching, longing, denial, are all means of self protection and a way to avoid pain. Different attachment styles will have a huge impact on how we experience grief and the loss of a loved one or situation.  The quality of our different attachment will affect our ability to accept and normalise our emotional reactions when bonds are broken. Western culture has opted for a sanitised version of loss and grief, we don’t tend to talk very much about it so don’t know what to expect. We will all experience different kinds of loss throughout our life.  Loss offers tangible evidence of our mortality, which can trigger feelings of helplessness, vulnerability and fear. All of which will have a profound  impact on our inner self.  Grief is not weak or self-indulgent. I believe talking […]
12th August 2018

Depression

Depression will affect one in four of us at some point in our lives. If depression is not being recognised then neither will be a suicidal intention. This blog is written to share my experience which will hopefully help others manage their own internal conflict. Depression is defined as a mental condition, characterised by severe feelings of hopelessness and inadequacy typically accompanied by a lack of energy and interest in life that then affects everyday functioning. There are a number of depressive disorders, the classification of which depends on the length of time and the level of severity. So, whether we are treating mild or severe forms of depression there are areas that need to be considered such as biological and genetic internal factors as well as external factors such as loss, grief, along with environmental and early life experiences. There is no one typical experience of depression, but what we do know is depression affects the way we think, feel and function and it is a difficult condition to manage and live with. I became depressed when I was diagnosed with Scleroderma. I believed I had been given a death sentence, it became hard for me to articulate clearly and remember things. My thought processes became jumbled and I became trapped in a cycle of rumination. I became withdrawn and got lost in unhealthy thought processes and considered suicide as a solution. At the time I found counselling and medication to be a huge help. I have since learnt […]
27th August 2018

Responding to Challenging Situations

This blog is dedicated to my mother and loved ones, along with the incredible doctors and nurses who saved my life. This time last year I was in the hospital struggling with double pneumonia and pleurisy.  My heart was under immense pressure, I was unable to breathe on my own, it felt like my chest was being crushed, the pain was excruciating and I drifted in and out of consciousness.  I can remember telling my mother I was ready to die, and letting go.  I felt I was floating above snow-capped mountains surrounded by the most incredible light, I felt no pain, just peace.  I then remember jolting back into the hospital bed and the excruciating pain returning.  I made a decision that if I could survive this life experience,  then I would be able to overcome any challenging life situation. I will never again take for granted being able to breathe on my own, or have a shower and be able to use the bathroom independently.  Whenever I’m struggling, or feel stressed and anxious, I take a deep breath in and access the inner peace and calm that I experienced in the hospital. My experience in hospital highlighted the importance of tolerance and choosing how we communicate with others. We can choose to communicate with kindness, state our position politely and firmly then disengage, or, we can choose unhelpful and unhealthy ways to communicate, such as finger-pointing, shouting, blaming,  attacking others and causing conflict. Both ways of communicating are within our control, we just need to be aware of our conscious processes. Observing other patients and their families go through their own challenging life […]
10th November 2018

Improving our communications

  This blog is written in tribute to those suffering from a neurological or cognitive impairment, who are no longer able to communicate verbally. Talking enables us to connect with others and gives us a sense of belonging. Communicating positively enhances our life satisfaction, increases a general sense of wellbeing and so makes us happy. But why is it then so many of us get it wrong? Communication is about how we send messages and interpret the replies, no message is ever without some kind of bias. Due to our upbringing, our education, our culture and our social and cultural mores we cannot but have biases and prejudices. This all increases the likelihood of us misinterpreting what the other person is trying to tell us. I believe the most important skill for successful communication is listening. And listening is different from hearing. If you want to communicate clearly then it is important for you to carefully listen. Listening is an art, which requires you to be genuinely interested in a non-judgemental, unbiased way, without your own agenda intruding. Some tips for helping you to communicate more productively with others: Avoid giving titles and interpretations of your observations. Try to be objective, opinions are often expressions of bias. Arguments often develop from repressed emotions. It is important to own up to your own feelings, no one makes you feel emotions, they are simply your subjective responses. Make your requests as clearly as you can for as they become clearer then your […]
11th February 2019

Anxiety

This blog is aimed at helping people manage their anxiety. Everyone experiences anxiety at some point in their lives, understanding a little of how our body responds to stress and anxiety is a helpful way to deal with it, then hopefully long-term problems will not occur. We perceive situations and problems either as a challenge or a threat,  if we feel the demands outweigh our resources to cope then the situation or problem becomes a stressor.  If the stress is not addressed and processed, it becomes an internal stressor and moves into what we call anxiety. There are differences between stress and anxiety. Stress is when the body thinks it is under attack and switches to ‘fight or flight’ mode releasing a mixture of hormones and chemicals, namely adrenaline and cortisol, these prepare the body to take physical action. When the threat has subsided, the hormones coursing through our bodies recede and we return to a state of calm.  However, if our brains are not functioning correctly, our mind says we are under threat and our systems continue to produce high levels of cortisol and adrenaline. We can only undergo ‘fight or flight’ responses for a limited amount of time before our bodies become overloaded, exhausted, unable to self-regulate and this is where problems occur. There are overlaps between stress and anxiety, but the two emotions feed off different stressors. With stress, the stressors are perceived from the outside in the here and now and with anxiety, the stressors are perceived from the […]